Since we brought Josh home from the NICU life has been busy. Actually, to say it’s been busy is an understatement. I was ready for the sleepless nights and dealing with a newborn and a four year old but what I was NOT ready for was all that plus another medically complicated child with a bazillion doctor appointments.
Josh has been home two weeks today and so far we’ve seen the pediatrician, the ENT, speech therapist twice, PT and our new cleft palate team (ENT, speech therapist, 2 Developmental Pediatricians, a plastic surgeon, and a partridge in a pear tree). In addition to Josh’s appointments, I have also been to my GP for a Zoloft refill (because lord knows I need help keeping my sanity these days), a pulmonologist and hematologist for an incidental finding of a pulmonary embolism I didn’t even know I had. Awesome, right?!
While I have LOTS of things to share with you in this blog post based on the plethora of appointments listed above, today I’m going to focus on the meeting with our cleft palate team since that is most important.
We originally were going to take Josh to Shriners in Chicago but at a last minute decision decided to get an opinion at Advocate Children’s in Park Ridge. As mentioned we met with lots of specialists that day and we were there for a few hours. When we first brought Josh home he was laying on his back and doing fine with a slight incline but a few days later he started making loud snoring noises. I showed a video to the ENT and she didn’t like the sound of it and ordered a sleep study (which will be done tomorrow!). If Josh is showing signs of obstruction then there is a surgery that can be done on his jaw to lengthen the bone to reduce the obstruction. It’s called a “jaw distraction” and while you can read about it here , basically they break the jaw and put headgear on the child that you have to crank to move their jaw. Sounds frightening but if it’s medically necessary so be it. https://www.childrensmn.org/services/care-specialties-departments/ear-nose-throat-ent-facial-plastic-surgery/conditions-and-services/mandibular-distraction/
I’ve taken my older son Thomas for overnight EEGs quite a few times so I’m hoping this isn’t all that much different. I’ll post something about the sleep study next week for anyone that may have questions!
The only other takeaway from the meeting with the team was a lot of helpful tips on feeding Josh. Only giving him 30 minutes, watching for signs of stress while eating, putting him in a sidelying position to help him better coordinate swallowing and breathing. The speech therapist also mentioned that, provided his motor skills are on time, they begin working with babies at 4 months to eat with a spoon and at 6 months to drink from an open cup. After the palate is repaired, Josh won’t be able to take a bottle for 2-3 weeks so they want to make sure he’s capable of getting nourishment. Although, he only has a few months left of the ng tube before they start recommending g tube placement so who knows if the bottle will even be an issue at that point. A lot of this is all “wait and see” which can really drive you crazy…especially as a parent!
Feel free to comment with any questions, thanks for reading!